Batting at ChickyPlan is still for Elle to grow (4.82 kg this AM, a slow, steady increase) and fight off any bugs with her courses of antibiotics and anti fungals. There will be more labs and a CT, then a care team / family conference on Monday regarding her status and plan. If things look good at that time, she will get her Hickman placed and plan for next steps of Xplant. She is undergoing extended workup d/t her fragility.
Daylon is back on the BMT unit -yay! Heard he is smiling, even laughing, and riding around in a wagon. Payton is getting closer to the chemo count down. Still working on getting Bella back here. Chloe and I got to watch a movie with Bella's parents and big sister, Ali at the RMH cinema. It was a fun distraction, especially for Chloe who had a great time chatting it up and playing with Ali, who is four.
Proud of my dad; getting right
in there with a dressing change
Elle's wounds have improved; pink instead of beefy, less drainage and less odor, and a slightly smaller area affected. She is still quite uncomfortable at times though and it is a challenge to figure out where the problem is. It could be a folded ear she is lying on or cramping before a diarrhea (from the antibiotics). Sometimes her bandages shift, or she may be teething (no sign of a tooth yet,however). She is consolable if we find the problem and / or give her narcs. Oh, she is on Oxycodone now instead of Morphine as it seems to be very effective without the itch.
What is new, is that she sometimes is happy and interested in some distraction, but notices me leaving or getting too far away and then yowls...makes going to the restroom difficult but I love that she is so interactive now! She is batting at toys hanging overhead or wiggled in front of her. She watches lights and movement of her new crib toy. She is calmed by lullabies. Last night, she was crying and I jumped out of bed to see what was wrong and as soon as I came near, the crying abated, and when I presented her dolly, she smiled. Heaven,even at 345 AM.
I love,love that picture of her with her doll!!! They could be twins! She is soooo super sweet! I was excited for the few hours we were neighbors today! Good luck at Monday's conference!! Love, Jenn
ReplyDeleteI am totally in love with your daughter. I love that last picture of Elle with her doll. She is just too cute for words.
ReplyDeleteSure hope she continues to improve and that the conference on Monday goes well.
Tell her that Leah's Nana is sending hugs and kisses. Love Leah's Nana
Praying for you guys. You are definitely right when you say its good we are all in this together. I know, as well as you know, we will do whatever needs to be done for our babies and we will conquer this horrible disease. Elle is precious, you just want to squeeze her precious little cheeks, but can't. I am with everyone else about the doll pic. I love it, I love it!!!
ReplyDeleteJoy Thornton
Payton's mommy
We will continue to pray for healing. She is such a beautiful baby girl. I love the last pic of her and her baby doll. What a darling. Have faith.
ReplyDeleteBlessings,
Krista Boyd
( Keric's mom)
Oh she is just SO CUTE!!!
ReplyDeleteOh, missing that sweet face! :) Sending healing, healthy prayers your way. And so glad you and Chloe have had some time together, too. xoxo
ReplyDelete